Guest guest Posted June 2, 2010 Report Share Posted June 2, 2010 Sandy,Unfortunately, that is a rude sounding, but fairly common response from doctors regarding UC/Crohns. Hang in there, you are on the right track for healing. Sometimes things are a little rough, but in the end SCD is a really healthy way to eat and you get well at the same time.AmeliaTo: BTVC-SCD Sent: Wed, June 2, 2010 9:24:17 PMSubject: bad doctor experience Some of you gave me a "pep" talk because I started loose BMs and was to see a NEW GI. The new doctor was the worse experience I have ever had in my life. It was horrible. I am still shaking. She told me my BMs were fine because I must have a stricture and that my stomach burning was from crohns in my stomach/small intestine (I have had this for years without a crohns diagnosis in my stomach - in fact it is getting better since I got off the crohns meds - my goal). She hollered at me from the moment she walked in to the room and I had not even mentioned SCD. She told me I can not be cured of UC or crohns unless I have my crohns removed (had UC in 1984 and in three years on meds I did not have it anymore)She wants to put me on the stronger meds. Needless to say I am not going back - I have no doctor now and I am alright with that! Was this a nightmare or did it really happen to me? Sandy uc 1984 crohns 2009 no meds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2010 Report Share Posted June 2, 2010 The new doctor was the worse experience I have ever had in my life. It was horrible. I am still shaking.Sandy,I am SO sorry. I can totally empathize! Once, I went to a new GI doctor for a 2 hour appointment, and I had to keep leaving to 'use the bathroom' to regain my composure because I was shaking and near tears and just felt like I was about to lose it. Retelling the experience to others, it never seems all that bad, but when you're in that situation discussing YOUR health, it really is rattling. I always have my mom and dad there with me, and it's STILL so horrible. I'm so sorry you had such a bad experience! It really does make you grateful for the SCD though, doesn't it? For me, coming back to this group after seeing a doctor is like a ray of new hope, because it makes me remember that we CAN and WILL heal ourselves. Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 22.5 mg 1x per day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2010 Report Share Posted June 2, 2010 My own experience with my GI doc was traumatic. I am in a small town and have no other choice. He is very competent. I can understand him not agreeing with SCD- after all, it was not part of his training or education. You want the doctor to be skeptical and careful and only use things they are familiar with (wish that included SCD ). What I can not get over is how he treated me personally. I felt completely dehumanized- and I never mentioned SCD. Being in a small town, I actually fear that he will find out that I am on it and treat me worse. I do not understand how they can be so insensitive. PJ > > > The new doctor was the worse experience I have ever had in my life. > > It was horrible. I am still shaking. > > > Sandy, > I am SO sorry. I can totally empathize! Once, I went to a new GI > doctor for a 2 hour appointment, and I had to keep leaving to 'use the > bathroom' to regain my composure because I was shaking and near tears > and just felt like I was about to lose it. Retelling the experience to > others, it never seems all that bad, but when you're in that situation > discussing YOUR health, it really is rattling. I always have my mom > and dad there with me, and it's STILL so horrible. I'm so sorry you > had such a bad experience! It really does make you grateful for the > SCD though, doesn't it? For me, coming back to this group after seeing > a doctor is like a ray of new hope, because it makes me remember that > we CAN and WILL heal ourselves. > > Cheers! > Alyssa 16 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Azathioprine 75 mg 1x per day > Prednisone 22.5 mg 1x per day > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2010 Report Share Posted June 2, 2010 At 03:24 PM 6/2/2010, you wrote: Was this a nightmare or did it really happen to me? It's not uncommon for people to have Crohn's affecting the entire digestive system -- and that may be what the doctor was assuming, especially if you have not been taking the traditional medications. Remember that the majority of doctors really DO believe that there is no cure for Crohn's or UC except surgery. They really don't believe that SCD can work, because the research was done around 60 years ago. Some of these doctors hadn't even been born when Dr. Haas was researching. In some cases, their PARENTS hadn't been born yet! I will say that I feel it unreasonable of her to yell at you and make pronouncements without having run any tests. Do you have a second candidate in mind for a gastro? Little though we like it, sometimes, having a doctor on call can be a safety line. Getting off meds altogether is most people's goal for being on SCD. Never forget, though, that just because you might, at some point, need some meds to get over a hump, it doesn't mean you've failed at SCD, or that SCD doesn't work. Healing takes time. The screwy thing that many of us find that foods that we THOUGHT we were fine with before SCD may not be for awhile after the intro diet, because the intro has caused lots of bacteria, who were real happy with their food supply, to suddenly realize that they're facing a famine. They're cranky, and you're not giving them the food they want, so they're throwing a temper tantrum. Introducing foods gradually -- and keeping a food diary, so you can see what actually agrees with you and what doesn't -- usually works the best. Some lucky saps can dive headfirst into anything that's SCD legal. The majority of us cannot. You've already figured that the stress of preparing for this appointment -- which, it sounds to me, may have been even worse than you feared it might be -- and all the other stresses in your life may have been a factor in the symptoms. So, you'll be trying to de-stress. You might, if you want something nutritional and easy to digest, consider something on the order of the savory smoothies -- broth, meat, cooked vegetables, pureed and seasoned to your liking and/or tolerance. Easy to fix, easy to slurp down, and packed with nutrition. I did a lot of these after my cancer surgery (for uterine cancer) and my oncologist thought it was a great idea because it would be easy on my gut, which was rather displeased with everything they did to it while removing uterus, Fallopian tubes, and ovaries, not to mention digging around for lymph nodes to check for if the cancer had spread (it hadn't). LIke I said earlier, healing takes time. But you will get there! Two steps forward, and one step back, and three steps forward and two steps back.... you may sometimes feel as if nothing is happening. And then one day, you'll realize that you made it through the entirety of something you wanted to do without having to race for the bathroom. That you have more energy. That you are getting your life back. That's SCD at work. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2010 Report Share Posted June 2, 2010 Wow Sandy, I’m sorry you had such a blockhead for a potential new GI. I have had 3 really competent <sarcasm> GI’s when I had Health Ins. – they were competently telling me diet had nothing to do with my Crohn’s, prescribing drugs like crazy and the premier GI was advocating surgery – well, he would – he is a premier gut surgeon. Thank gawd I lost my health insurance and found the SCD and eventually this board. I would still recommend having a doctor though – someone willing to listen to you and work with you. I found a really great doctor who has heard of the SCD and who I went to initially for a LDN prescription (for the cream). So I feel fortunate. There are some good docs out there along with a lot of mediocre ones. Hang in there! You had a stressful experience. Can you soak in a Epsom salt bath or soak your feet to relax? Carol CD 22 yrs SCD 5 yrs B12 shots LDN cream (11 mo.) From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of willowcreek09 Some of you gave me a " pep " talk because I started loose BMs and was to see a NEW GI. The new doctor was the worse experience I have ever had in my life. It was horrible. I am still shaking. She told me my BMs were fine because I must have a stricture and that my stomach burning was from crohns in my stomach/small intestine (I have had this for years without a crohns diagnosis in my stomach - in fact it is getting better since I got off the crohns meds - my goal). She hollered at me from the moment she walked in to the room and I had not even mentioned SCD. She told me I can not be cured of UC or crohns unless I have my crohns removed (had UC in 1984 and in three years on meds I did not have it anymore)She wants to put me on the stronger meds. Needless to say I am not going back - I have no doctor now and I am alright with that! Was this a nightmare or did it really happen to me? Sandy uc 1984 crohns 2009 no meds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2010 Report Share Posted June 3, 2010 Pre-SCD, I had 'acute' cd in the stomach. Worst experience I've had so far and it's been semi-gruesome. The doctor I was seeing at the time put me on 30 mg of prednisone and I stayed on it for several months with Protonix twice a day. She gave me a very basic diet of baked dark meat chicken, turkey, broiled fish and soft cooked vegetables. The second endoscopy was clear--she said remission. I'm not sure what your doctor was talking about removing. With crohn's, I've read even if they have to do a resection or remove something, it's likely to come back somewhere else--usually at the site of the last operation. And everyone knows there is no 'cure', just remission if you're lucky. I don't like yellers though especially with the threats and the 'forced' pred, whatever meds. Who needs that when you feel bad or miserable anyway? Sometimes you do need medicines like prednisone to get through but hopefully you can find a doctor who talks with you--not at you. Some are really weird--had to be a weird field to choose. Sorry you had such a bad experience and good luck on finding a new doctor. In the stomach is nothing to mess around with they say. I would try to find someone new while doing SCD (it's miser-----able).. Debbie 41 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2010 Report Share Posted June 3, 2010 I will echo the advice already given that with SCD we need to work with our doctors. It's not an either/or. We need to have good medical care. We're lucky if we find a nice and competent doctor, but the two don't always go hand in hand. In that case, it's best to go with competent. I wish mine had been nicer to me, but he's still my doctor- in case I need him- hopefully I won't I'm sorry you got yelled at-I hope you can find a kinder one, or at least stick with a good one until you do. PJ > > Pre-SCD, I had 'acute' cd in the stomach. Worst experience I've had so far > and it's been semi-gruesome. The doctor I was seeing at the time put me on > 30 mg of prednisone and I stayed on it for several months with Protonix > twice a day. She gave me a very basic diet of baked dark meat chicken, > turkey, broiled fish and soft cooked vegetables. The second endoscopy was > clear--she said remission. > > I'm not sure what your doctor was talking about removing. With crohn's, > I've read even if they have to do a resection or remove something, it's > likely to come back somewhere else--usually at the site of the last > operation. And everyone knows there is no 'cure', just remission if you're > lucky. > > I don't like yellers though especially with the threats and the 'forced' > pred, whatever meds. Who needs that when you feel bad or miserable anyway? > > Sometimes you do need medicines like prednisone to get through but hopefully > you can find a doctor who talks with you--not at you. Some are really > weird--had to be a weird field to choose. Sorry you had such a bad > experience and good luck on finding a new doctor. In the stomach is nothing > to mess around with they say. I would try to find someone new while doing > SCD (it's miser-----able).. > > Debbie 41 cd > Quote Link to comment Share on other sites More sharing options...
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